during resuscitation: attitudes of staff on a paediatric Parental presence intensive care unit Anita S. Jarvis

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1 Parental presence during resuscitation: attitudes of staff on a paediatric intensive care unit Anita S. Jarvis Anita S. latwis BSc (Hons), RGN, RSCN, ENB415, Senior Staff Nurse, Paecliatric Intensive Care Unit, University Hospital NHS Trust, Nottingham, UK (Requests for offprints to ASJ) Manuscript accepted 8 January 1998 Although family presence during resuscitation is becoming more acceptable, many medical and nursing staff still have concerns and doubts about it. To ascertain paediatric medical and nursing staff's attitudes towards parents being present during resuscitation, 60 staff in a Paediatric Intensive Care Unit were surveyed. The results revealed that even though 89% of staff feel that parents should be able to be present, many have the same concerns and doubts that have been highlighted in previous, albeit adult-centred, studies. Increased stress to staff and parents were some of the concerns identified in a study which also showed interest in the subject and a need for further education. INTRODUCTION According to Eichhorn (1995), there are probably few topics in health care that are as emotionally charged as that of family presence during resuscitation. Until recently, it was standard policy in many hospitals to exclude family members during a relative's resuscitation. Research on the subject of parents being present during their child's resuscitation is very important, as most of the literature and research on the subject has been conducted in the USA and is mostly limited to adult resuscitation in Accident and Emergency Departments. Despite Back & Rooke (1994) stating that there is a general acceptance of allowing parents to be present during a paediatric resuscitation, the author has encountered doctors and nurses working in a Paediatric Intensive Care Unit who have expressed reservations about this parental presence. This is hardly surprising for the topic is a 'highly emotive issue steeped in legal, ethical and moral dilemmas' (Connors 1996, p42). From a review of the literature, the attitudes of doctors and nurses would appear to be one of the main obstacles to families being present during resuscitation, with one view being that 'witnessing a code is an experience that is non-therapeutic, regretful and traumatic enough to haunt the surviving family member as long as he or she lives' (Osuagwu 1991, p363). Therefore, it was decided to undertake research to examine the attitudes and experiences of doctors and nurses towards parental presence during resuscitation in one specific area, a six-bedded Paediatric Intensive Care Unit. Although the term parent is used throughout this research, it is meant in the broadest sense to include care-giver or next-og kin. LITERATURE N REVIEW NN Many relatives, if given the choice, would prefer to be present during attempts at resuscitation, but at present, it is unusual for them to be offered this opportunity (Hanson & Strawser 1992, Adams et al 1994, Gregory 1995). This literature review explores why this is not common practice, and examines the advantages and perceived disadvantages of relatives being present during resuscitation, taking into account the views of doctors, nurses and relatives. Advantages A number of advantages have been identified for relatives being present during resuscitation (Martin 1991, Hanson & Strawser 1992, Adams et al 1994): It contributes to a healthier bereavement by helping them come to terms with the reality of death, so avoiding prolonged denial. They can speak to their relative and say whatever they need to say whilst there is still a chance that he/she may be able to hear them. Some believe that their presence was important both to themselves and the dying person. They can see that everything possible was done for their relative, rather than just being told that this was so. They can touch the dying person whilst he/she is still warm. Intensive and Critical Care Nursing (I 998) 4, 3-7 r 998 Harcourt Brace & Co. Ltd

2 4 Intensive and Critical Care Nursing Parents have greater satisfaction with the care their child receives and feel more involved 0doder 1994). Asking parents to leave may be a greater distraction to the resuscitation than allowing them to stay (Judkins 1994). Nurses view the patient more as a part of a loving family and less a clinical challenge (Hanson & Strawer 1992). There are also positive legal reasons for allowing relatives to be present, as an open attitude probably reduces the risk of litigation (Renzi-Brown1989). It is also suggested 'that for many relatives it is more distressing to be separated from their family member during these critical moments than to witness attempts at resuscitation' (Resuscitation Council UK 1996, p6). Disadvantages However, there are potential disadvantages of relatives being present during resuscitation, which are expressed in the fears and reservations of doctors and nurses (Resuscitation Council UK 1996): the potential for increased stress to staff an increase in the distress of relatives the decision to stop resuscitation may be influenced by the presence of relatives the relatives may try to interfere the clinical performance of the staff involved may be affected by distressed relatives inadequate team leadership and failure to follow resuscitation protocols could give the impression of sub-optimal treatment, with the potential for medico-legal repercussions. Bloomfield (1994) proposes that relatives should be asked to leave but in a way that will allow those to stay who feel they must. If relatives do stay, it is recommended that there should be an experienced doctor or nurse with them to explain what is happening and why (Resuscitation Council UK 1996). This close supervision and restriction of numbers should prevent any physical or verbal interference by a relative, with all the potential dangers, for example during defibrillation (Resuscitation Council UK 1996). METHODS The location of the research was a six-bedded Paediatric Intensive Care Unit in a large teaching hospital. There was a total of 60 subjects, consisting of 20 doctors who provide medical cover and 40 nurses who work on the unit. The research design was in the form of a survey using both a quantitative and qualitative approach. A questionnaire was the method of data collection. The questionnaire was constructed using 10 closed-ended dichotomous questions that were sequenced in a psychologically meaningful order. For the purposes of this research, the questions related to resuscitation in the Paediatric Intensive Care Unit of children who have had a respiratory and/or cardiac arrest. A 'comments' section was also included to enable those respondents who were verbally expressive to give a richer and fuller perspective on the issue being researched. This was because the aim of the research was to explore, compare and provide insight into the positive and negative attitudes of doctors and nurses towards parental presence during resuscitation. The questionnaire had face validity and, to some extent, content validity, as it was based on information from the literature. A small pilot study was done to check that the questions were understandable and appeared likely to produce reliable responses. The ethics committee stated that ethical approval was not necessary, as the research was confined to medical and nursing staff. Approval to conduct the research was obtained from the Paediatric Senior Nurse. It was ensured that all the subjects gave their informed consent. RESULTS A total of 56 questionnaires were completed and returned (a response rate of 93%). These included 19 from doctors (a response rate of 95%) and 37 from nurses (a response rate of 92.5%). The responses to questions are presented in Table 1. The comments that were made raised various issues, which for the purpose of analysis were divided into key themes of resources, communication, feelings and advantages and disadvantages of parents being present during resuscitation. Twenty-six (46%) staff made comments about resource issues, with both doctors and nurses raising similar concerns. It was stressed that parents are best accompanied by a support person who can give explanations, otherwise it could be an extremely traumatic experience for them. However, concerns were expressed that there may not be enough adequately trained staff to support these parents, and that the staff themselves need training and guidance in the support role. One doctor commented 'that the task of supporting and counselling parents at such an emotive time may be an unrealistic challenge for most staff'.

3 Parental presence during resuscitation $ No. % No. % Total of doctors of nurses Question (n = 56) (n = 19) (n = 37) Responses ). 50 (89%) 13 (68%) 37 (i 00%) (79%) 13 (68%) 31 (84%) (79%) 18 (95%) 26 (70%) (43%) 8(42%) 16 (43%) 5. 23(41%) 7(37%) 16 (43%) (92%) 17 (89%) 35 (94%) (43 /6) 4 (21%) 20 (76 /6) (62%) 7 (37%) 28 (76%) 9. 17(30%) 2(I I%) 15 (41%) (61%) 10(53%) 24 (65%) feel that parents should have the option to be present whilst their child undergoes resuscitation believe that a support member of staff must accompany those parents who want to be present have experienced parents being present during resuscitation have been asked by parents directly if they could be present of those asked had allowed parents to be present would allow those parents who requested to be present during their child's resuscitation to stay would actually ask those parents of a child undergoing resuscitation if they would like to be present believe that if the child should die, then the grieving process of those parents who are present during resuscitation is helped of the 44 (79%) who have experienced parental presence during resuscitation thought it was a helpful experience towards the parents' grieving process if the child had died who have experienced parental presence during resuscitation would in future resuscitations enable other parents to have the option to be present Regarding the theme of communication, nine (16%) staff made comments. Most of the doctors felt that it would be difficult to ask parents beforehand in anticipation whether they wanted to be present during resuscitation, whereas nurses felt that the topic needs to be addressed more often. One nurse stressed that parents must receive adequate explanations and support, so that the decision to stop resuscitation would not be affected. The feelings of staff and parents prompted 19 (34%) staff to make comments. Doctors felt more strongly than nurses that staff have the right not to have parents present, mainly due to concerns that the actions of staff may be affected by parental presence. A doctor commented that the Team Leader leading the resuscitation should be able to say 'no' to parental presence, depending on the staffs confidence and ability. However, another doctor stated, in contrast, that 'even if you prefer parents not to stay, you must respect their request to be present'. Nursing staff were very concerned about the feelings of parents, in that by asking parents if they wanted to be present, it may make them feel that it is expected of them, even if they do not want to stay. Some nurses even commented that some parents may well feel relieved to be asked to wait outside, as it takes the decision away from them. Thirty-two (57%) staff commented on the advantages and disadvantages. Considerably more nurses 18 (49%) felt it is advantageous to have parents present, compared to 3 (16%) doctors. However, more doctors, 7 (37%) expressed concerns about disadvantages compared to only 4 (11%) nurses. The advantages that were perceived are: parents can witness that everything was done, therefore reducing the risk of suspicion and resulting litigation if parents don't see and don't know what happened, it may make them have doubts forever it helps with the grieving process it helps parents to gain a realistic view of attempted resuscitation and death. The disadvantages that were identified are: the experience may be too distressing for some parents to witness, with them being more emotionally traumatised by being present. One doctor commented that 'it would leave scars on the parents' memory as they witness,what, to them, is chaos'. difficult to give explanations if no support person available increased stress for staff actions ofjunior staff may be inhibited or prejudiced by presence of parents, with one doctor commenting that 'he would not allow anything to prejudice the chances of a successful resuscitation' risk of violence and interference causing distraction.

4 6 Intensive and Critical Care Nursing DISCUSSION g~n~ N RECOMMENDATIONS The research evoked great interest, with most of the responses to the questionnaire being positive, and the majority of participants being keen to make comments. Many of them expressed concerns and doubts which previous studies had highlighted, even though these were mostly concerned with adult resuscitation in Accident and Emergency Departments (Hanson & Strawser 1992, Back & 1Kooke 1994, Chalk 1995). This research raises a number of important issues, and offers some insight into the attitudes of doctors and nurses towards introducing guidelines that would give parents the option to be present during their child's resuscitation. The attitudes of doctors and nurses, as highlighted in this research, indicate that the advantages of allowing parents to be present during their child's resuscitation appear to outweigh any potential disadvantages. Some parents are known to have been helped in their bereavement by being present during attempts to resuscitate their child. According to the Resuscitation Council UK (1996), the majority of people, on current evidence, would prefer to be there. However, some professionals, especially doctors, take the opposite view, preferring parents not to be present. When a cardiac and/or respiratory arrest occurs there is no time to start a dicussion with the child's parents about the advantages and disadvantages of them witnessing the resuscitation attempt. It is essential, therefore, that some guidelines are in place. These guidelines may help to alleviate some of the concerns that doctors and nurses have expressed by ensuring proper preparation and training. If resuscitation is to be witnessed, it is essential that the parents are given an informed choice, and that they are supported throughout by appropriately trained and experienced staff. It is a recommendation of the Resuscitation Council UK (1996) that families should be given the opportunity to be with their loved one during resuscitation, and that proper provision must be made for those who indicate that they wish to stay. It is also essential that the resuscitation Team Leader is prepared for and aware of the parents' presence. Indeed the goal for resuscitation training 'should be that the team is able to allow parental presence' (Lee 1996, pl0). However, it is stressed by the Resuscitation Council UK (1996) that it must always be the patient's welfare and safety that remain the prime consideration. From guidelines that the Resuscitation Council UK (1996) have published and data collected in this research, the following recommendations and guidelines can be made to address staff's concerns. These would enable parents to have the option to witness their child's resuscitation: ensure parents understand that they have the choice of whether or not to be present, and that they can leave at any time explain to parents what they may see, especially any procedures they may witness, and that someone is there to look after them ask parents not to distract the resuscitation team, for the well-being of their child and their own safety. Ensure they understand that if they do, they will be asked to leave. Allow physical contact only when it is safe to do so if parents protest to resuscitation efforts either being stopped or continued, then they should be continued whilst the Team Leader reviews the situation, explaining the reason for the decision to the parents. The final decision to stop must be made by the Team Leader, as parents may later have guilt feelings if they feel that the final decision was theirs. In recognition of the increased stress in coping with the challenge of parents witnessing resuscitation, staff should receive further training in the following areas: resuscitation protocols and procedures; concerns and resistance that some staffhave expressed; problem of deciding when to stop resuscitation; dealing with potentially very distressed parents asking difficult questions; ways of introducing the concept, perhaps by firstly bringing in the parents to be with their dying child before resuscitation is discontinued, and then allowing parents to stay if they specifically ask to do so. CONCLUSION In conclusion, the paediatric staff surveyed for this research found it to be a positive, thoughtprovoking and emotive issue, and expressed an interest in implementing parental presence during resuscitation in the Paediatric Intensive Care Unit. The findings highlighted in the literature review were substantiated and further

5 Parental presence during resuscitation 7 educational requirements were identified, including the need to continue to provide regular paediatric resuscitation training to all medical and nursing staff by appropriately trained personnel. Staff involved in this research are keen to move towards the recommendations of the Resuscitation Council UK (1996), so that the preferences of parents are taken into account by professionals moving towards an ethic of more open medicine. It is, therefore, essential that staff communicate with parents what their options are during their child's resuscitation. Finally, as one respondent commented, 'since parents have cared for their child from birth, why should they be denied access at death?'. REFERENCES Adams Set al 1994 Should relatives be allowed to watch resuscitation? British Medical Journal 308: Back D, Rooke V 1994 The presence of relatives in the resuscitation room. Nursing Times 90 (30): Bloomfield P 1994 Should relatives be allowed to watch resuscitation? British Medical Journal 308: Chalk A 1995 Should relatives be present in the resuscitation room? Accident and Emergency Nursing 3 (2): Connors P 1996 Should relatives be allowed in the resuscitation room? Nursing Standard 10 (44): Eichhorn D 1995 Letting the family say good-bye during CPR. American Journal of Nursing 95 (3): 60 Gregory C 1995 I should have been with Lisa as she died. Accident and Emergency Nursing 3 (3): Hanson C, Strawser D 1992 Family presence during cardiopulmonary resuscitation: Foote Hospital emergency department's nine-year perspective. Journal of Emergency Nursing 18 (2): Judkins K 1994 Relatives can be helpful. British Medical Jom'nal 309:406 Lee P 1996 The E and P of Paediatric resuscitation. Paediatric Nursing 8 (9): 8-11 Martin J 1991 Rethinking traditional thoughts. Journal of Emergency Nursing 17 (2): Osuagwu C 1991 ED codes: Keep the family out.journal of Emergency Nursing 17 (6): 363 Renzi-BrownJ 1989 Legally, it makes good sense. Nursing (3): 46 Resuscitation Council UK 1996 Should Relatives Witness Resuscitation? Resuscitation Council UK, London Yoder L 1994 Comfort and Consolation: a nursing perspective on parental bereavement. Paediatric Nursing 20 (5):